Actively Recruiting
Congenital Aniridia Patient Questionnaire
Led by Assistance Publique - Hôpitaux de Paris · Updated on 2025-09-15
100
Participants Needed
1
Research Sites
156 weeks
Total Duration
On this page
Sponsors
A
Assistance Publique - Hôpitaux de Paris
Lead Sponsor
U
URC-CIC Paris Descartes Necker Cochin
Collaborating Sponsor
AI-Summary
What this Trial Is About
Congenital aniridia is a pan-ocular genetic disease characterized by a partial or complete absence of the iris, hence its name. The prevalence ranges from 1 / 40,000 to 1 / 96,000 births, but it may be underestimated. This condition combines several types of eye damage and could associate systemic manifestations, with a variable phenotype and genotype. This study aims to identify eye and systemic manifestations in congenital aniridia and to determine the patients' knowledge of their own disease through a survey prepared by ophthalmologists from the Ophthalmology Department of Necker-Enfants Malades Hospital, reference center in France for this pathology. The patient fills it out only once.
CONDITIONS
Official Title
Congenital Aniridia Patient Questionnaire
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Patients aged 18 years or older with congenital aniridia who can complete the survey independently
- Patients under 18 years old with congenital aniridia whose parents can complete the survey
- Adult patients or parents/guardians of minors who have been informed about the study and do not oppose participation
You will not qualify if you...
- Patients with neurological disorders preventing them from answering the survey, except minors whose parents can answer for them
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
Hôpital Necker-Enfants Malades
Paris, France, 75015
Actively Recruiting
Research Team
A
Alejandra Daruich, MD, PhD
CONTACT
H
Hélène Morel
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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